ALS, genetics and other causes

[TimberRT]

Not sure where to start and this is kind of a long story but here goes. My Dad died from ALS back in 95. He was diganosed in Sept. 94 and died the following July. At that time they told us there was a test for it but who really wanted to know? I always figured being the one most like my Dad I would get it. He had been part of the occupation troops in Japan in WW2 after the dropped the bomb.

Sure enough many years later at work my left hand just went numb one night and I reported it as the policy indicated. The safety person in charge took the report and told me she felt it was a repetitive motion injury to my elbow and Virginia didn't cover that under workmans comp which I knew. So I elected to contact an orthopeadic doctor and got my first visit to a neurologist. While doing the nerve induction we talked about family history and told him about the ALS. He also told me at the end of the visit the referring doctor was going to be puzzled and there were no signs of ALS.

I ended up going back for more tests and still no ALS. Then in 2008 the right hand just shut down on New Year's night while I was kicking back watching a movie and enjoying a night off that I had signed up to work but didn't have to. No warning just one minute working and then dead. Off the rest of the month and it just got better on its own though that was the next visit to the neurologist. By now though my youngest sister was having problems.

In May 2008 it happened again though it was the left hand this time. However I was already set up with the neurologists and got in there quicker this time. More tests, a lot of bloodwork and another MRI. Still nothing, no ALS and it again got better. However my sister has gotten worse and it was confirmed ALS. It would seem she had accumulated a lot of heavy metals in her system that they were trying to purge out for treatment. What is even more weird is that the family that lived next door where I had grown up as a child lost a family member to ALS years before my Dad died.

Now my sister was able to do some research into the family line but none of us is really flush with money and found that there have been family members in the past that have died from this. Some of these people go back aways and am not sure how she determined it was ALS.

So I guess I need comments and suggestions as to where to go from here. Is there something in the water that my sister drinks from her well that is making her more prone to this? The only thing they found with me was a very sight elevated level of arsenic, coming from the granite around where I live. I am also probably a little more active then her, work in a factory and raise goats so I'm always hauling around hay bales and 50 pound feed sacks. She worked at a computer when she was able. There has also got to be a better way to research family history without paying out a leg and arm for it.

My sister is on a new treatment I read about here Lutimax and she thinks its helping. It really broke my heart on my last visit. She was so scared of falling she only moved once from the couch to the kitchen table. Doesn't help that she also has some bad crippling in her fingers, Rheumotoid arthritis which could also be related to what she has going on.

[halfin]

I'm very sorry to hear about your sister and the difficult changes she is going through. The fact that both your sister and father got ALS suggests that it is the "familial" type which is genetic and inherited. However, since your mother's family was very probably OK, there is a 50-50 chance whether you inherited the gene for it. You sister was unlucky and inherited it, but that doesn't say anything about whether it happened to you.

The impression I have from my reading is that if you did inherit the gene for ALS, you will probably get it if you live long enough. If you didn't inherit it, your chances of getting ALS are extremely small. I don't think there is any reliable genetic test for this at present. Even among familial ALS, they can only identify known genes in about 20% of cases. So they might be able to test you and tell you that you do carry a gene which is known to be bad and will probably get ALS someday; but they can't give you a guarantee that you are OK. Not enough is known at present for the genetic test to be very informative.

The various environmental exposures to radiation, metals, toxins, etc, probably don't change the eventual outcome. Maybe they would affect the timing. How old were your father and your sister when they got it, and how old are you? If you live substantially past those ages then that would be a good sign that you didn't inherit the gene.

The symptoms you describe don't sound much like ALS, which is slower and seldom shows improvement. However I did read that familial ALS in particular is more likely to be preceded by unusual neurological manifestations such as pain and tingling. Of course, many people do experience various neurological troubles over the course of their lifetimes, without having ALS. Our bodies aren't perfect and things do go wrong from time to time. So your experiences certainly don't mean you are going to get ALS.

The remaining question is, are there things you can do to extend your healthy lifetime, in case you did inherit the gene for ALS? Unfortunately I don't think there is much known on this question. Probably it wouldn't hurt to try some of the same nutritional strategies as for PALS (People with ALS). Many of us take antioxidant supplements and vitamins as the disease is known to involve oxygen-related damage to the nerve cells. You can search on the forums here to see some of the supplements people have tried.

Again, bear in mind that even though your father and sister got ALS, you may very well have been lucky and escaped the bad gene. Try not to let your current neurological symptoms worry you too much. Unless or until you start to experience the gradual weakness and other symptoms that are characteristic of ALS, you can try to remain hopeful and optimistic. I know it must be heartbreaking to see your sister's difficulties, with the added fear that you might experience the same thing someday. I am very sorry that you have to be going through this.

[hopingforcure]

I think Halfin gave you amazing advice, and it prove's how educated we patients become, great job and post. Welcome to the forum you sound like a very level headed caring person, and we are here for you.